Category: Fight for change

“Difficulty doing specific tasks isn’t the same thing as being an actual child. … I not mentally 12. I am mentally 28. I just have an intellectual disability.” -Ivanova Smith, adult with an intellectual disability
“You can support people without condescending to them. … Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are and direct the means by which I receive support.” Finn Gardiner, adult with a developmental disability

At least one form of discrimination in our society is alive and well. We discriminate against young people, every day, in policy and in practice. For example, in the United States, we don’t let people drive a car until they’re 16, vote until they’re 18, or buy alcohol until they’re 21. We deny freedoms to our citizens based on age alone, and it’s not even very controversial.

I’m not going to challenge age minimums in this post. I’m just using this as an example to shed light on a more problematic form of discrimination related to perceived age. This is the infantilization of adults with intellectual and developmental disabilities (IDD), based on a concept called “mental age.” Like chronological age, people use “mental age” as a shortcut to judge the maturity and competency of others, but the consequences of judging people by their “mental age” can be far more serious.

The concept of “mental age” was first introduced by Alfred Binet, co-creator of the first IQ tests, in the early twentieth century. Generally, “mental age” has been measured by comparing an individual’s score on a standardized IQ test with the average performance of their same-age peers. For people with IDD, “mental age” may also be estimated by comparing the person’s demonstrated physical, speech, adaptive or cognitive skills against the average for various age groups.

Not surprisingly, “mental age” came about alongside the eugenics movement in the United States. Mental ages were used to classify various groups of “feebleminded” individuals by severity: Adults with a mental age of 9-12 years were classified as “morons”; those with a mental age of 6-8 years were classified as “imbeciles”; and those with a mental age of 2-5 were classified as “idiots.” Individuals from any of these groups were thought unfit to reproduce.

Besides the disturbing history of mental age theory, using mental ages to classify individuals is problematic because:

First, mental age oversimplifies: Boiling an individual’s intellectual, developmental and adaptive functioning down to a single number obscures that person’s complexity. Some individuals may be highly skilled or knowledgeable in some areas, but experience impairments or naivete in others. Tests that measure only one or a few kinds of intelligence can miss other kinds of intelligence or compensatory skills that the individual uses. Intelligence test scores can also be biased by social and cultural factors unrelated to actual intelligence or skills.

Second, mental age is treated as a ceiling: Chronological age is, by definition, a dynamic concept. People are constantly aging, and this is part of the reason why age minimums are considered relatively acceptable in society: They are temporary. Eventually, everyone will get old enough to drive, vote, or buy a drink. In contrast, though, mental age is often described as a limit that someone reaches and cannot exceed. An adult with IDD may be labeled as having a mental age of 3, 7, or 10 years old, and once that mental age is reached, they are expected to think and act that way for the rest of their life. For example, in the 2001 film I Am Sam, the protagonist-a single father-is labeled with a mental age of 7. It is strongly implied that he will no longer be a fit dad after his child turns 8 because his daughter will continue developing while his development is locked. Although adults with IDD may reach plateaus in certain skills, everyone has the potential to adapt or improve their life circumstances. There have been powerful stories of adolescents or adults with severe communication impairments, for example, who showed great leaps in communication skills when presented with the right technology, the right support person, or both. Oftentimes it was discovered that these individuals had knowledge or skills that they had been unable to express to others in the past. Mental age labels artificially restrict that growth process. (Ironically, Alfred Binet himself believed that intelligence could change over a person’s life, but the IQ tests he helped design have been taken out of that context).

Most important, mental age is used to control freedoms and support: Outside the disability space, we understand that younger children usually need more support than older children and adults. We also reserve some freedoms (like driving, voting or buying alcohol) exclusively for older teens and adults. In the disabled world, too, presumed mental ages are used to deny freedoms. Even if a teen or adult with IDD is not explicitly labeled with a mental age, the prevailing belief that people with IDD are childlike leads too many parents and educators to infantilize them. For example, Finn Gardiner writes:

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord’, even though I was only going through the motions of practising Christianity. … When I was nineteen years old, my parents installed parental controls on my Windows account. … I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W Bush in 2004. My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me entailed controlling me.

As Finn points out, these actions are not just insulting and frustrating, but could also be dangerous. A teen or adult with an IDD still has desires concomitant with their chronological age, including a desire for autonomy. An individual who has been infantilized may gravitate toward peers who seem to respect their autonomy. If that same individual has never been educated about sex, drugs, or other issues relevant to their chronological age, they could be an easy target for abuse and exploitation.

And, age can be used as a weapon in reverse, too. An adult with IDD may be denied supports due to their age, or admonished to “act their age” during a public meltdown, for example. But, many nondisabled adults have meltdowns, too. (We might see one on the floor of Congress today). Being an adult does not mean one lacks support needs, just as having support needs does not mean one is essentially a child.

So, how do we combat thinking based on mental age theory?

First and foremost, we need to separate maturity from support needs. Ivanova Smith suggests some ways in which we can concisely describe another person’s support needs without any reference to mental ages. For example:

Ivanova can’t drive due to developmental disability that causes them to have struggles with multitasking and hand eye cordination.
Ivan needs help across busy streets because they don’t understand traffic very well and need support to be safe.
Ivan may need support with emotional regulation because they process emotions differently than other people.

In a related vein, disabled children often receive primary support for disability-related needs from their parents or other family caregivers. Once these children become adults, they may still need human supporters, but having a parent continue to be the disability-related support worker can become a conflict of interest. When parents support their children, they hold authority in the relationship, but when disabled adults get support from people like readers, sign language interpreters or personal care assistants, they benefit from being the one in charge of the interaction. For example, when I was a child, my parents read to me often. They controlled what, when, and where the reading took place, which was entirely appropriate when I was a small child. As an adult, I still need human assistance accessing print, but I need to be the one in charge of what is being read to me. It can be difficult for a parent and adult child to renegotiate a supporting relationship in such a way that the parent is essentially working for their adult child (even if unpaid). It is important for adults with IDD to have self-determination, to the greatest extent possible, in directing who will support them, with what, when and where this support will occur. Depending on the resources available to that individual, and their specific impairments, family members may need to be involved with some of that process. This can work, but only if the family member(s) are willing to consider the disabled adult as someone with their own voice in decisionmaking.

Our data suggest that special needs has already become a dysphemism (a euphemism more negative than the word it replaces). Special needs will likely become a slur, if it is not already, and it might eventually become a dysphemistic metaphor, akin to dumb, lame, crippled, deaf, and blind. These linguistic transitions, along with the data reported here, recommend against using the euphemism special needs and instead using the non-euphemized term disability.

Disability has been called by many names. Perhaps one of the most commonly used, and the most indirect, way of labeling disability is with the term “special needs.” I heard that term a lot growing up, and I never liked it, but I couldn’t put my finger on what I disliked about it. Perhaps it was that the phrase was often used in a condescending way, to signify difference or special treatment, or to refer to a segregated place like a “special needs classroom.”

When I started doing inclusion work, I was thrilled to hear fellow self-advocates sharing my dislike for the term “special needs” and advising that we just use the term “disability” instead. We can debate linguistic reasons why one term is better than the other, but ultimately, I’m interested in using the term that is most likely to lead to positive, inclusive interactions with nondisabled people. So, I was fascinated by a research study comparing how a dults in the United States (most nondisabled) judge individuals when they are labeled as having a disability vs. having special needs. (Full article is linked at the end of this post).

Dr. Morton Ann Gernsbacher and colleagues at the University of Wisconsin-Madison designed an online study where participants read through six scenarios. In each scenario, they had to rank-order their preference to partner with four different individuals. For example, in one scenario the participants read descriptions of four potential college roommates and ranked them in order of whom they would prefer to room with, while in another scenario, they rank-ordered four potential basketball teammates, and in a third, they rank-ordered possible partners for a cooking class. The researchers randomly shuffled the scenarios for each participant, so that each participant saw one scenario where one of the potential partners had “special needs,” a different scenario where one of the partners had “a disability,” and a third where one of the partners was labeled with a specific disability (randomly assigned to be either a sensory or a neurological disability). Besides the disability labels, the partner was described in an identical way for all participants. The researchers looked at the participants’ rankings and calculated, across all the participants and scenarios, how often the partner with special needs/a disability/a specific disability was ranked last.

By random chance, each partner should be ranked last about 25% of the time. So when a particular partner was ranked last more than 25% of the time, this signifies discrimination. Indeed, when the partner was labeled as having “a disability,” discrimination occurred, with the partner being ranked last 33% of the time on average. Discrimination also occurred when the partner was given a specific disability: across the different types of disabilities, they were ranked last 35% of the time. But the worst discrimination occurred when the partner was labeled as having “special needs.” Under that condition, across scenarios, they were ranked last 40% of the time. Statistically, partners were significantly more likely to be ranked last when they were labeled “with special needs” than when they were labeled either “with a disability” or with a specific impairment.

At the end of the study, the researchers also asked the participants to write down the first five words that came to mind when they saw the term “special needs” and the term “disability.” They categorized the responses and found that when the participants were thinking about “special needs,” they wrote down more negative words like “annoying,” “helpless,” or “needy” than when they were thinking about “disability.” In contrast, when thinking about “disability,” the participants wrote down more positive words like “strong,” “capable,” or “acceptance” than when they were thinking about “special needs.” In addition, the term “special needs” was associated more often with intellectual/developmental disabilities, whereas the term “disability” was associated more often with physical impairments. So, it is possible that some of the bias observed could reflect the heightened prejudice and stereotyping against people with intellectual and developmental disabilities compared with physical and sensory disabilities.

What’s wrong with saying “special needs?”

The researchers postulate three reasons why “special needs” might evoke more discrimination than “disability.” First, the term “special needs” is imprecise. When someone is labeled as having “special needs,” it is unclear whether they have an impairment at all, or how severe that impairment is. So, people might assume the worst, or feel uncomfortable with the ambiguity. Second, “special needs” is often associated with segregation: Institutions like “special education,” “special needs classrooms,” or “Special Olympics” are all, by definition, segregated to only serve disabled people. The phrase “special needs” may implicitly justify segregation, giving segregated institutions the praise of being “special” while implying that people who attempt to be included in the broader community (e.g., applying for a college roommate in an integrated dorm) do not belong. Third, the researchers cite examples of “special needs” being conflated with “special rights” or “special treatment.” The term “special needs” may activate feelings of envy that nondisabled people sometimes direct toward disabled people whom they perceive as unfairly taking “special” privileges.

Perhaps a phrase is just a phrase. And, what really matters is how we treat one another. But, this study shows that phrasing does matter. People can discriminate in very real ways based on first impressions, and when one person is described verbally to another, initial labels can set a powerful tone for those first impressions. This may be especially true when a parent or caregiver is speaking for a disabled person-someone who is too young to speak for themselves, or needs communication support. Describing such an individual as “having special needs,” even with the best of intentions, could make it harder for that individual to be accepted or valued in community settings, be it a daycare center, a sports team, a school, an adult recreation program, or a job.

In recent years, disabled people have pushed to replace the euphemism “special needs” with the straightforward term “disability.” However, many nondisabled people, particularly parents, educators or caregivers of disabled people, cling to the term “special needs.” This has resulted in another polarized debate between disability “insiders,” advocating language that they have claimed as identity-positive, and “outsiders” using language that is personally comfortable for them. A more disturbing development is the widespread use of the phrase “special needs parent,” which nondisabled parents may use to describe their own identities or experiences without regard to their child’s identity or language preference. While nondisabled parents certainly should be able to share their own experiences raising disabled children, it is important that they are sensitive to the complex history of ableism, including the ableism captured in language. As the researchers point out at the end of their paper, phrases originally intended to be euphemistic-like “special needs”-can eventually become “dysphemisms,” words with more negative connotations than the words they are replacing. Like other disability terms, “special” is even being used as a generic insult. Rather than just trading out euphemisms every few decades, we must work to stamp out the underlying biases and stereotypes that lead us to want to use euphemisms in the first place. Disabled people, including those with intellectual/developmental disabilities who are frequently stripped of their voices, must be front and center in that process.Read the full study here

Content warning: detailed discussion of filicide; discussion of Applied Behavior Analysis.
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“If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent.” Samantha Crane, Director of Public Policy, Autistic Self-Advocacy Network

On this blog, we talk a lot about “benevolent” ableism-people being overly helpful or patronizing toward disabled people. But there’s a much darker side to ableism, too. Like other minority groups, disabled people are disproportionately targets of violence and abuse. You may not hear it in the news, but there were 128 disability hate crimes in the U.S. in 2017
But unlike other minority groups, disabled people are targets of one of the most shocking forms of violence: attempted or actual murder by their family members.

The Ruderman Family Foundation reviewed media coverage between 2011 and 2015 and found reports of 219 disabled people in the United States and Canada who were killed by their primary caregivers-mainly children killed by parents, or elderly people killed by spouses. That number, likely an under-report, represents almost one murder per week
It’s a trend that can’t be explained as a few extraordinary cases.

What could possibly drive a parent to harm their own child?

I’m going to present a case study, of an attempted murder that occurred in 2013. And we can examine what happened, and what might have prevented it.

Kelli Stapleton lived in rural Michigan with her husband and three children. Her middle child, Issy, is autistic. According to Kelli, Issy had been aggressive since she was two years old, mainly toward her mother but also at school. When Issy was 13 years old, her mother enrolled her in a private behavioral treatment center for 7 months, and with a strict regimen of positive reinforcement for “good” behavior, the aggression decreased. But, when Issy came home, she started hitting Kelli again. And, Kelli learned that the local public school was unwilling to implement Issy’s strict behavior plan.

Kelli broke down, and devised a plan of escape for herself and her daughter. On the Tuesday morning after Labor Day 2013, she packed up an old van with pillows, blankets, two hibachi grills, and fixings for s’mores. She drove Issy into the woods where they shared s’mores. She gave Issy a double dose of her antipsychotic medication and brought the still-lit grills into the van, and shut the doors. As they slept, the van filled with smoke and carbon monoxide. By the time they were rescued that evening, Issy had developed a traumatic brain injury and was in a coma for four days. Kelli was charged with attempted murder. Ultimately, she pleaded guilty to first-degree child abuse and was sentenced to 10-22 years in prison.

I’m not even going to get into the horrifying amount of support that Kelli got on social media, with posts arguing that this was her only option. Nor will I talk about the disturbing trend of journalists centering disability filicide stories on the killer’s “burden” rather than on the victim. Or the fact that, unlike Kelli, many people who kill their disabled family members get off with much lighter sentences than those who kill their nondisabled family members.

No, I’m a social psychologist interested in predicting and controlling human behavior. So I don’t want to talk about the after, I want to talk about the before. I delved into Kelli’s blog and media appearances to find out what kinds of thoughts, emotions, and behavior precede such a tragedy.

And, the clues were strikingly obvious.

Kelli started a blog exactly one year before her crime, called “the Status Woe.” The blog started innocently enough, with some self-deprecating humor (not involving her daughter) about a bout of diarrhea on a camping trip. But then, the blog quickly turned to the evils of autism. As I read, it became clear that Kelli was all out of love or compassion for her daughter. She had been on a lifelong journey of trying to cure her daughter’s autism, starting with a rigid home program of applied behavior analysis (ABA) during Issy’s toddler years. She’d tried all kinds of diets and supplements, and behavior plans, to no avail.

In one blog post, titled “Autism’s Hard to Love Club,” Kelli wrote that “I have a daughter firmly planted in autism’s Hard to Love club” and then she preceded to describe issy’s overweight and poor personal hygiene to total strangers. In another post, deceptively titled “Inclusion: Doing It Right,” Kelli wrote about how she would draft the “mothers of the class”-peers and older children with helping dispositions- at Issy’s school to be her “helpers” and assigned “friends” in elementary school, and how all the kids wanted to be Issy’s “friend” so they would gain status and approval from adults. (Disability Wisdom readers know that’s not real inclusion!) Embedded in this post about fake inclusion is the comment that when new kids meet Issy, they discover that “Clearly she isn’t “normal.” Kelli also posted videos of Issy’s aggressions on her public blog, and the videos were edited such that the cause of the aggressions was never clear. She blamed Issy’s aggressions on “autism, hormones, and whoknowswhatelse.”

Kelli also gave a radio interview around the same time as she wrote her blog. On the interview, Kelli admitted that her ABA treatment may have contributed to Issy’s aggressions, saying, “I’ve been in her face since before she was two years old” reinforcing Issy’s every act as she tried to shape non-autistic behavior. On the air, Kelli didn’t sound like a murderer. But, her entire focus was on treating Issy. when the psychiatrist on the show asked Kelli if she had gotten counseling for herself or the rest of the family who was impacted by Issy’s aggressions, Kelli kept saying she just needed to focus on Issy and getting Issy’s behaviors under control before taking therapy herself. The psychiatrist warned that aggression was a family issue, that the entire family was involved and that “eventually, someone is going to get hurt.”

I cannot pretend to imagine how hard it must be to live with a family member who is aggressive on a regular basis. Undoubtedly, stress and burnout contributed to Kelli’s tragic choice. But, aggression is not an inevitable consequence of autism. Antisocial behavior never occurs in a vacuum. It not only impacts the entire family, but it is caused and reinforced by interplay between one’s internal neurology and the external environment. And perhaps one of the least-appreciated factors contributing to a disabled person’s alleged behavioral difficulties is ableism in the family unit.

I wonder what it would have been like for me, if my parents had kept me on such a tight ABA leash, getting in my face and correcting my every action since before I was two years old. If I knew that my parents not-so-secretly wished I wasn’t born the way I was and did everything they could to try to change me. If my parents filmed me in my most vulnerable moments and put those videos out along with weight-shaming comments on the Internet. If I had sensory needs my parents and teachers ignored. If I had no outlet for expressing my turbulent emotions during puberty, and if my attempts at communication were dismissed.

That’s right: I’d probably start hitting, too. And I’d probably keep aggressing if I learned that aggression was the only way for me to control my own life.

Issy Stapleton nearly died because of her mother’s ableism, plain and simple. In an interview with New York Magazine after her sentencing, Kelli recounted the day of the crime, saying of her fantasies of the afterlife on that day, “We will be done with autism completely … “For the first time
in my life I am going to be able to have a real conversation with her,
and see her. Get to know her, without the perseverations and the
aggression. In her real voice, not this robot voice.”

Kelli could not bring herself to accept the child she had. She tried in vain to change Issy, and Issy responded with aggression. The violence escalated until Kelli came to the conclusion that a murder-suicide was the only way for her to get the child she really wanted.

Preventing disability filicides goes far beyond just giving parents more respite services or better insurance coverage for therapies. (Indeed, Kelli was on her state’s waiver, where she had nnearly 24-hour help with Issy at home. Other parents with less support don’t hurt their children). Prevention needs to start much earlier. Anyone who plans to become a parent must get good, balanced information about disabilities and come to understand the normality of disability. Because, the statistics show that one in every 88 parents will bear an autistic child. Up to one in five parents will bear a child who, at some point in life, becomes disabled. Disability must be presented in our schools, our workplaces, our neighborhoods as a natural part of the human condition. People planning to become parents must have opportunities to examine their biases about disabilities and eventually come to accept the possibility of having children whose abilities might differ from their own.

From a policy perspective, this might mean having disability studies as a mandatory course in high schools. It might mean that whenever a child is diagnosed with any disability (whether in utero, at birth or later in childhood), the family is automatically connected with at least one self-advocate bearing the same disability. And, it means that when a child or teen presents with behavioral difficulties, assessment and treatment must focus on the entire family unit, not just the one family member manifesting symptoms.

“While I think we spent a lot of time thinking about how we educate people outside the little person community to treat us with a modicum of respect, I also think we need to have a real critical conversation about and within our community as it relates to our own #MeToo moments.”

Recent events in U.S. politics have forced us to reflect on the painful realities of sexual assault. Disabled people face a heightened risk of all kinds of abuse-physical, sexual, emotional and financial. Much of that abuse comes at the hands of nondisabled people, including family members and caregivers. But we must also work within our own disability communities to create a culture of respect and safety for all. Organizations like Little People of America (LPA) can offer valuable safe havens from the ableism that we encounter in the wider world. But the frustration that people may carry into these communities, if we aren’t careful, can lead to abuse. In this article, Rebecca Cokley reflects on her own experiences in LPA, and what she is teaching her children about respect and consent. Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress.

“Still, we mustn’t get complacent. Paratransit has many deeply-rooted problems, and since it fills service gaps for so many people, we need to fix what we have rather than tearing it all down in a fit of cynicism, or dismissing those who still use it.”

One of the greatest challenges disability can bring is the inability to drive. Public transit is a viable alternative for some of us, but public transit in its current state carries a number of limitations making it an impractical option for many. For example, people whose disabilities limit how far they can walk, how long they can stand or sit outdoors, or how well they can orient in unfamiliar environments may find that public transit doesn’t meet their needs.

“Paratransit” is a door-to-door transit alternative available in many urban areas, designed for seniors and people with disabilities. Customers can get door-to-door transportation at a cost only slightly higher than the cost of the public bus or train. Many of us depend on paratransit to get to work, school, shopping, important appointments, or social outings. As this post illustrates, though, many paratransit systems have multiple problems that can cause significant hardship for customers-earning such unaffectionate nicknames as “para-stranded” or “Dial-a-Wait.” While some of the problems may result from systems not having enough money to go around, others may be fixed with better training and a change in philosophy.Two Years of Paratransit: Sad Truths and Hard Lessons